Saturday, April 30, 2016

Day 11. Year 6.

11/30 days writing for the month of April. 37 %. (And, yes, I needed a calculator to do that math. Ha.) Eh. Not my best showing. Don't worry though.... I will keep writing for a while yet... please keep checking back. I may be able to get the rest done in May. ;)

I shared an article on my facebook page the other day. It was from a site called The Caregiver Network. It actually struck quite a chord with me. It's no secret that I've been struggling a lot this past year. The last thing I want to do is 'burn-out'. I have a lifetime of care-giving ahead of me. I can't burn out now.

I guess I'm writing about this tonight because I was thinking about it a lot today. I know I sound like a broken record... but this past year has done quite the number on me, on Vicki, on my husband, and on Joe and Ally. You never realize how fortunate you are -- being about to get in a vehicle and go for a drive, go do things, interact with the world. Until you can't anymore. We've always done things as a family. It wasn't always easy and things didn't always go well, but we kept trying.

And I think that's one of the things that makes me sad. I feel like I've stopped trying. Like tonight... it's been a really long week with both Ally and Joe having had the flu. Sometimes I feel like the walls are smothering me. And tonight my husband kind of suggested we all get in the car and drive down to Costco since the kids were feeling better. (And in a way, that sounded heavenly.) But then we exchanged looks with each other, and quietly decided not to try that. And it broke my heart. But it's easier not to try. One big reason is for safety. And that's something we are constantly aware of. At what cost do we put Vicki through trying to get in a vehicle? We worry both about the safety of Vicki and the safety of my husband as she is fighting. And then IF we were to get her in... then what? I would sit in the car with her while my husband and other kids went into Costco. And then we would have to struggle again to get her out of the van at home. And who knows how long those transitions would actually take. So it's easier to not try.

I've seen such a change in me too. It's easier to just keep my sweats and old t-shirt on and not bother trying to fix myself up and make myself 'presentable'. Sad. I know. It takes everything I have sometimes to do that.

Even though sometimes I feel like the walls of our house are closing in on me... it's an odd sort of comfort. I'm safe here. I'm used to it here. It's easier here. It takes everything I have to actually agree to go meet someone for a cup of coffee and girl talk when Vicki is at school. And that's the only time I can get away. And even then, it's easier not to. And I know that's dangerous.

About a month ago or so, I was able to take Ally to a function at school for about an hour one evening. It had been quite a while since I had done that. It was hard. I'm not quite sure how to describe it. Again, the author, Zachary White, from the article I read entitled "Inside Out" summed it up pretty good:

I watched others. They lived their lives.

I overheard their conversations. They talked of upcoming holidays and family reunions.

The more removed from others we feel, the more reasons we find to stay away from others.

The more we feel separated from others, the more reasons we find not to get out of the house and spend time with others.

The more removed you feel from others, the more strange it feels to be in the company of others.

I didn’t want to fake it anymore.

So there I was, out in the world. And I had so much trouble. I plastered a fake smile on my face and when acquaintances I knew asked me how Vicki was doing... I would pause. Do they really want to know? Or do they feel awkward around me to and it's just something to fill the air? Do I smile and lie? Or do I tell the truth? Most of the time I would say, 'She's struggling. But we are working through it.' But sometimes what I really wanted to say was: 'It's so hard. It's so hard on our whole family. We can't go anywhere anymore. No doctors know how to help her. We've had to stop everything she used to love and do. I can't even pick my other kids up from practices anymore.'

So, I sat down in the corner and watched Ally interact and have a good time. I texted my husband and I texted my friend who stays up with me until 2 in the morning and knows and understands how hard this is. How hard it is to go out and try to be 'normal'. I just wanted to run back to the safety of my house and my walls and my little family and shut the door. And text my friend in the middle of the night crying.

Sheesh. This sounds so horrible. Don't worry. I am a fighter. I find ways to mend my spirit so that I can continue to be strong for Vicki and for my family. But sometimes, like tonight, I like to be as honest as I can be. We all have struggles. We are all care-givers to someone, in someway. We all need to take a moment and regroup and recharge. It's not easy, but I find my ways. I hope you do too. No one has to be truely alone in this world. In some little way, I hope my blog helps someone out there, just a little bit. To know that even though our circumstances are all different. I am here for you, just as you all are here for me. xoxo